Eye donation in hospice and hospital palliative care settings: perceptions, practice, and service development needs - findings from a national survey.

OBJECTIVES: New routes for supply of eye tissue are needed in the UK to support transplant surgery and medical research. Hospice care (HC) and Hospital-based Palliative care (HPC) services represent potential supply routes. This paper reports findings from the survey arm of the Eye Donation from Palliative and Hospice Care-Investigating potential, practice preference and perceptions study (EDiPPPP), objectives of which were to: i) Investigate existing practice in relation to eye donation across HC and HPC settings; ii) identify perceptions of HCPs toward embedding eye donation into routine end of life care planning; iii) investigate the informational, training, or support needs of clinicians regarding eye donation. DESIGN: Online survey of UK-based HC and HPC clinicians, distributed through professional organisations (Association of Palliative Medicine (UK); Hospice UK). PARTICIPANTS: One hundred fifty-six participants completed (63% HC; 37% HPC-8% response rate, of n = 1894 approached). RESULTS: Majority of participants (63%, n = 99) supported raising eye donation (ED) with patients and families and agreed that ED should be discussed routinely with eligible patients. However, 72%, (n = 95) indicated that staff within their clinical setting did not routinely discuss the option of ED in end-of-life care planning conversations with the majority of participants reporting that the option of ED was not 'routinely discussed in multi-disciplinary team or other meetings. CONCLUSIONS: Despite significant support, ED is not part of routine practice. Attention to barriers to embedding ED and reducing knowledge deficits are urgently needed to increase the supply of eye tissue for use in transplant operations.

Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study.

Background: Over 2 million people in the United Kingdom are living with sight loss with costs to the United Kingdom economy reported as £4.34 billion annually. Conditions that lead to sight loss and impaired vision can be treated if eye tissue is available for corneal transplantation, reconstructive surgery and research into eye diseases. Supply of eye tissue (only available via eye donation) is currently insufficient to meet demand; therefore, new routes are needed. Hospice and hospital-based Palliative Care Services have been reported as potential donation sources of this tissue. Objectives: To: (1) scope the size and clinical characteristics of the potential eye donation population from research sites; (2) map the donation climate of each research site; (3) identify factors that enable or challenge service providers to consider the option of eye donation from a local and national perspective; (4) identify service users' views regarding the option of eye donation and the propriety of discussing eye donation; and (5) develop and pilot an empirically based intervention designed to change behaviours in relation to eye donation. Design: A 36-month mixed-methods, multicentre study undertaking three work packages. Settings: Three hospice care and three hospital-based palliative care services situated in the North, Midlands and the South of England (one service of each type per region). Participants: Work package 1 - 105 service providers. Work package 2 - 62 service users, and 156 service providers in the national survey. Work package 3 - 21 expert consultees (patient and public involvement, cross discipline). Data sources: Scoping review, retrospective note review, qualitative interviews/focus groups, participant observation, secondary analysis of primary data, national survey, transparent expert consultation. Results: Potential: The retrospective notes review demonstrated that of 1199 deceased patients' notes, 553 (46%) patients met the criteria for eye donation (56%, n = 337 in hospice care service settings and 36%, n = 216 in hospital palliative care service). Practice: Less than 4% of all cases agreed as eligible for donation had been approached or referred for eye donation. Eye donation is not currently an embedded practice at local and national levels. Perceptions: Service providers were motivated to discuss eye donation but lacked opportunity and capability. Service users were willing and able to hold conversations about eye donation but were not aware of the option and had not had the option discussed with them. Preferences: Service users wanted to be offered the option of eye donation, and service providers wanted bespoke education and training related to eye donation. Evaluation of the developed intervention STEPS - Support Toolkit for Eye donation in Palliative care Settings will follow implementation of the full intervention (expected to begin in October 2022). Limitations: Due to the significant impact of the COVID-19 pandemic on clinical sites, partner organisations and national service providers, only two elements of the developed intervention have been pilot tested for proof of concept and the response rate to the national survey was low (8%). Conclusions: Significant potential exists for eye donation from hospice care and hospital palliative care services; however, individual and organisational behaviour as well as information system-based changes are needed to maximise this potential. Future work: Evaluation of the STEPS - Support Toolkit for Eye donation in Palliative care Settings; Research exploring the wider public knowledge and views regarding eye donation; research exploring the use of language by National Health Service Blood and Transplant-Tissue and Eye Services in their public-facing infographics, communications and campaigns (specifically the use of the term eye donation). Trial registration: This trial is registered as ISRCTN14243635: Eye donation from palliative care and hospice care settings. Funding details: This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (17/49/42) and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. 20. See the NIHR Journals Library website for further project information.

The Royal National Institute of Blind people report that over 2 million people in the United Kingdom are living with sight loss. This number is predicted to double to nearly 4 million by 2050. Conditions that lead to sight loss and impaired vision can be treated if eye tissue is available through, for example corneal transplantation, reconstructive surgery and research into eye diseases. However, the problem is that there is not enough eye tissue available to meet current need. Patients under the care of hospice care services and hospital palliative care services who, due to a cancer diagnosis, are unable to donate other organs or tissues, may be able to donate their eyes. To explore potential for eye donation in these settings, we looked at the clinical notes from patients who died in the previous 2 years to see if they could potentially have been a donor. We also interviewed patients and carers seeking their views regarding 'if', 'when' and 'how' a conversation about eye donation should take place within end-of-life care planning. We also asked healthcare professionals (via interviews and a national survey) about their views regarding eye donation being part of end-of-life planning, and what they saw as the key barriers to this becoming a routine practice. We found that many patients are eligible for eye donation, but very few are asked about this option, and that patients indicated they wanted this option raised with them so that they could make decisions about donation. A review of patient notes, healthcare professional interviews and survey responses indicate that eye donation is not part of the current routine clinical practice. Our work presents a clear case for a change to current practice so that patients who wish to donate are offered this opportunity as a part of routine end-of-life care, and that changes in the current practice require specific training initiatives and institutional support.

The potential for eye donation from hospice and palliative care clinical settings in England: a retrospective case note review of deceased patients' records.

There is a need to identify additional routes of supply for ophthalmic tissue in the UK. This paper reports the findings from a national study exploring the potential for eye donation (ED) from three Hospice Care (HC) and three Hospital Palliative Care Services (HPC) in England. The objectives addressed in this paper are i.) to establish the size and describe the clinical characteristics of the potential eye donor population across six clinical sites; ii.) to identify challenges for clinicians in applying the standard ED criteria for assessing patient eligibility. Retrospective assessment of 1199 deceased patient case notes, 601 Hospice Care and 598 Hospital Palliative Care services, against current eye donation criteria. Clinicians' assessments were then evaluated against the same criteria. by specialists based at the National Health Service Blood and Transplant Tissue Services division (NHSBT-TS). Results of the assessment and evaluation are reported as descriptive statistics (numerical data). Free-text comment boxes facilitated clarification and/or justification of review and evaluation decisions. 46% (n = 553) of 1199 deceased patients' notes were agreed as eligible for eye donation (Hospice care settings = 56% (n = 337); Palliative care settings = 36% (n = 216). For all eligible cases (n = 553) the option of ED was recorded as being raised with family members in only 14 cases (3%). Significant potential exists for eye donation from the clinical sites in this study. This potential is not currently being realised.

12†The potential for eye donationfrom hospice and palliative care clinical settings in England - a retrospective case notes review of deceased patient records.

BACKGROUND: There is a need to identify additional routes of supply for ophthalmic tissue in the UK due to deficits between supply and demand. In response to this need the NIHR funded study, Eye Donation from Palliative and Hospice Care: Investigating Potential, Practice, Preference, and Perceptions) (EDiPPPP) project was developed in partnership with NHSBT Tissue Services ( now Organ Tissue Donation and Transplantation). AIM: This presentation will report findings from work package one of EDiPPPP which aimed to: scope the size and clinical characteristics of the potential eye donation (ED) population via a large-scale, multi-site retrospective case notes review across England establishing: the size of the potential ED population; describe the clinical characteristics of the potential ED population and identify challenges for clinicians in applying the standard ED criteria for assessing patient eligibility. RESULTS: Retrospective review of 1200 deceased patient case notes (600 HPC; 600 HPCS) by reviewers (healthcare professionals) at research sites against current ED criteria were then evaluated by specialists based at the National Health Service Blood and Transplant Tissue services (NHSBT-TS). Note review established that 46% (n=553) of 1200 deceased patients notes were agreed as eligible for eye donation (total cases Hospice care settings = 56% (n=337); Palliative care settings = 36% (n=216) with only 1.2% of potential donors referred to NHSBT-TS for eye donation (Hospice care settings = 1.2% (n=4); Palliative care settings = 1.3% (n=3).Application of the eye donation criteria resulted in an 81% agreement rate outcome for all sites (HPC = 79.2%; HPCS = 82.8%). If cases where there was a difference of assessment but where NHSBT evaluation indicated eligibility are included (n=113) the potential donor pool rises from 553 (46.1% total cases) to 666 (56%) eligible cases. CONCLUSIONS: Significant potential exists for eye donation from the clinical sites in this study. This potential is not currently being realised. In view of the predicted increase in need for ophthalmic tissue it is essential that the potential route to increase the supply of ophthalmic tissue demonstrated in this retrospective note review is accessed. The presentation will conclude with recommendations for service development.

7†Current practice of healthcare professionals in hospice and hospital palliative care settings related to eye donationas part of end-of-life care: a national survey.

BACKGROUND: Around 53% of the world's population have no access to the benefits of sight saving and sight restoring transplantation surgery due to a short fall in the supply of ophthalmic tissue that is only available via eye donation (ED). In England the National Health Services Blood and Transplant (NHSBT) seeks to have a consistent and sustained supply of eye tissue to satisfy current demand, however, historically and currently there is gap between supply and demand. Data reports that between April 2020 - April 2021, 3,478 corneas were donated a 37% decrease on the previous year figure of 5,505 corneas. In view of this shortfall other routes to supply are needed with Hospice Care and Hospital Palliative care settings being a potential route. AIM: As Health Care Professionals (HCPs) are the gatekeepers to the option of ED being raised with patients and family members this presentation will share findings from a national survey carried out with HCPs across England between November/December 2020 seeking knowledge related to i) current practice across the ED pathway, 2) views of HCPs toward embedding ED in routine end of life care planning; and 3) what current informational, training, or support needs are reported by survey participants. FINDINGS: One hundred and fifty-six participants completed the online survey, representing an 8% response rate (of n=1894 approached). Responses to a 61-item questionnaire indicated that: the majority of respondents were aware of ED as an end-of-life option, however, despite the reported perception of most participants that discussing ED was not distressing to patients and family members the option of ED was only discussed IF the patient or family member first raised the topic. Currently most care settings do not actively encourage the option of ED being discussed with patients and/or their family members, nor is ED routinely discussed in multi-disciplinary meetings. Furthermore, when asked about training related to ED, 64% of participants (n = 99/154) said they had unmet training needs. CONCLUSION: Findings from this survey indicate a paradoxical stance toward ED among HCPs in hospice and palliative care settings; that is, substantial support for and positive attitudes toward inclusion of ED in end-of-life planning (including within their own practice), aligned with low levels of activity in offering the option. There is very little evidence of eye donation being embedded in part of 'routine' practice, and this may be linked to unmet training needs.

10†Eye donation in palliative and hospice care settings: patient views and missed opportunities!

Eye donation in Palliative and Hospice care settings: patient views and missed opportunities. BACKGROUND: There is a global shortage of donated eye tissue for use in sight saving and sight restoring operations such as corneal transplantation. In the UK the Royal National Institute of Blind People (RNIB) report that over two million people are currently living with sight loss with this figure predicted to rise to approx. four million by 2050. Patients who die in palliative and hospice care settings could potentially donate eye tissue, however, the option of eye donation is not routinely raised in end-of-life planning discussions. Research evidence suggests that health care professionals (HCP) are reluctant to discuss eye donation as they perceive it as something that will distress patients and family members. AIM: This presentation will share findings regarding the views of patients and carers, including: their feelings and thoughts about the option of eye donation being raised with them; who they think should raise this issue; when this option should be discussed and who should be included in the discussion. FINDINGS: Findings are drawn from the NIHR funded national study: Eye Donation from Palliative and Hospice care contexts: investigating Potential, Practice, Preference and Perceptions (EDiPPPP) in partnership with three palliative care and three hospice care settings in England. Findings indicate high potential for eye donation but very low levels of identification of potential donors; low levels of approach to patients and family members about the option of eye donation; lack of inclusion of eye donation in end-of-life care planning and/or clinical meeting discussions (i.e. Multi-Disciplinary Team (MDT) meetings) and very limited awareness raising initiatives or activity to inform patients and carers of the option of eye donation. CONCLUSION: It is imperative that patients who would want to be a donor are identified and assessed for eligibility for donation as part of high-quality end of life care. It is clear from studies reported over the past 10 years that not a lot has changed regarding the identification, approach, and referral of potential donors from palliative and hospice care settings, and this is due in part to perceptions held by HCPs that patients would be unwilling to engage in discussions regarding the option of eye donation in advance of their death. This perception that is not substantiated by empirical research.

Systematic Reviews and Quality Appraisal of In Vitro Cancer Studies: Investigation of Current Practice.

BACKGROUND/AIM: To assess the quantity and quality of systematic reviews of in vitro cancer studies. MATERIALS AND METHODS: PubMed, MEDLINE, Embase, Web of Knowledge and PROSPERO databases were searched. Articles described as systematic reviews of in vitro studies, focused on or relevant to cancer and published in English were selected and appraised using an adapted version of AMSTAR 2 'critical domains'. RESULTS: From 4,021 records, 41 reviews described as systematic and cancer-related were identified. Publication dates indicate increasing frequency of systematic review conduct. Mean number of databases searched was three (range=1-8). Thirty-six reviews (88%) reported search methods, 35 (85%) specified inclusion criteria, 26 (63%) reported study selection methods, and 21 (51%) used reporting guidelines. Only 13 reviews (32%) involved formal quality assessment. CONCLUSION: Detailed investigation of reviews of cancer-relevant in vitro studies indicates need for further development and use of robust search strategies, appropriate quality assessment tools, and researchers with relevant skills.

Barriers and Facilitators to Eye Donation in Hospice and Palliative Care Settings: A Scoping Review.

Background: The need for eye tissue for use in sight saving and sight restoring surgery is a global issue. Approximately 53% of the world's population has no access to interventions such as corneal transplantation. Low levels of eye tissue impact on service providers such as National Health Service Blood and Transplant who aim to achieve a weekly stock of 350 eyes but do not meet this target. Aim: Patients who die in hospice and palliative care settings could be potential donors; therefore the aim of this systematic scoping review was to identify the potential for eye donation and barriers toward it from these clinical contexts. Design: A scoping review following the Joanna Briggs scoping review methodology was applied to search the global literature. Results: 13 articles from the global literature were retrieved. Evidence indicate that 542 patients could potentially have donated their eyes. Key barriers to increasing eye donation include the reluctance of healthcare professionals to raise the option of eye donation and the evidenced lack of awareness of patients and family members about donation options and eligibility. This review also indicates a lack of clinical guidance drawn from high-quality evidence proposing interventions that could inform clinical practice and service development. Conclusion: The scoping review presented here provides an up-to-date view of the current potential for, perceptions toward, and practice underpinning offering the option of eye donation to dying patients and their family members in hospice and palliative care context.

A Systematic Approach to Review of in vitro Methods in Brain Tumour Research (SAToRI-BTR): Development of a Preliminary Checklist for Evaluating Quality and Human Relevance.

BACKGROUND: A wide range of human in vitro methods have been developed and there is considerable interest in the potential of these studies to address questions related to clinical (human) use of drugs, and the pathobiology of tumours. This requires agreement on how to assess the strength of evidence available (i.e., quality and quantity) and the human-relevance of such studies. The SAToRI-BTR (Systematic Approach To Review of in vitro methods in Brain Tumour Research) project seeks to identify relevant appraisal criteria to aid planning and/or evaluation of brain tumour studies using in vitro methods. OBJECTIVES: To identify criteria for evaluation of quality and human relevance of in vitro brain tumour studies; to assess the general acceptability of such criteria to senior scientists working within the field. METHODS: Stage one involved identification of potential criteria for evaluation of in vitro studies through: (1) an international survey of brain tumour researchers; (2) interviews with scientists, clinicians, regulators, and journal editors; (3) analysis of relevant reports, documents, and published studies. Through content analysis of findings, an initial list of criteria for quality appraisal of in vitro studies of brain tumours was developed. Stage two involved review of the criteria by an expert panel (Delphi process). RESULTS: Results of stage one indicated that methods for and quality of review of in vitro studies are highly variable, and that improved reporting standards are needed. 129 preliminary criteria were identified; duplicate and highly context-specific items were removed, resulting in 48 criteria for review by the expert (Delphi) panel. 37 criteria reached agreement, resulting in a provisional checklist for appraisal of in vitro studies in brain tumour research. CONCLUSION: Through a systematic process of collating assessment criteria and subjecting these to expert review, SAToRI-BTR has resulted in preliminary guidance for appraisal of in vitro brain tumour studies. Further development of this guidance, including investigating strategies for adaptation and dissemination across different sub-fields of brain tumour research, as well as the wider in vitro field, is planned.

Implementing professional behaviour change in teams under pressure: results from phase one of a prospective process evaluation (the Implementing Nutrition Screening in Community Care for Older People (INSCCOPe) project).

OBJECTIVES: To evaluate the implementation of a new procedure for screening and treatment of malnutrition for older people in community settings and to identify factors promoting or inhibiting its implementation as a routine aspect of care. DESIGN: Prospective process evaluation using mixed methods with pre/post-implementation measures. SETTING AND PARTICIPANTS: Community teams (nursing and allied health professionals) within a UK National Health Service Community Trust. 73 participants were recruited, of which 32 completed both pre-implemetation and post-implementation surveys. MAIN OUTCOME MEASURES: NoMAD survey for pre-post-intervention measures; telephone interviews exploring participant experiences and wider organisational/contextual processes. METHODS: Data prior to implementation of training, baseline (T0-survey and telephone interview) and 2 months following training (T1-follow-up survey). Quantitative data described using frequency tables reporting team type, healthcare provider role group and total study sample; analysis using Wilcoxon rank-sum (subgroup comparison) and Wilcoxon signed-rank (within-group observation point comparison) tests. Qualitative interview data (audio and transcription) analysed through directed content analysis using normalisation process theory. RESULTS: High support for nutrition screening and treatment indicated by participants. Concerns expressed around logistical, organisational and specialist dietetic support. Pre-post-training measures indicated a positive impact of training on knowledge of the new procedure; however, most implementation measures saw no significant changes between time points or between subgroups (training participants vs non-participants). Implementation barriers included the following: high levels of training non-completion; vulnerability to attrition of trained staff; lack of monitoring of post-intervention compliance and lack of access to dietetic support. CONCLUSION: Greater support necessary to support implementation in relation to monitoring of training completion, and organisational support for nutrition screening and treatment activity. Recommended changes to implementation design are as follows: appointment of a key person to support and monitor procedure compliance; adoption of training as an e-learning module within the existing organisational platform to increase participation in changeable working conditions.

What factors promote or inhibit implementation of a new procedure for screening and treatment of malnutrition in community settings? A prospective process evaluation of the Implementing Nutrition Screening in Community Care for Older People (INSCCOPe) project (UK).

INTRODUCTION: Malnutrition remains underdetected, undertreated and often overlooked by those working with older people in primary care in the UK. A new procedure for screening and treatment of malnutrition is currently being implemented by a large National Health Service (NHS) trust in England, incorporating a programme of training for staff working within Integrated Community Teams and Older People's Mental Health teams. Running in parallel, the Implementing Nutrition Screening in Community Care for Older People process evaluation study explores factors that may promote or inhibit its implementation and longer term embedding in routine care, with the aim of optimising sustainability and scalability. METHODS AND ANALYSIS: Implementation will be assessed through observation of staff within a single area of the trust, in addition to the procedure development and delivery group (PDDG). Data collection will occur at three observation points: prior to implementation of training, baseline (T0); 2 months following training (T1); and 8 months following training (T2). Observation points will consist of a survey and follow-up semistructured telephone interview with staff. Investigation of the PDDG will involve: observations of discussions around development of the procedure; semistructured telephone interviews prior to implementation, and at 6 months following implementation. Quantitative data will be described using frequency tables reporting by team type, healthcare provider role group, and total study sample (Wilcoxon rank-sum and Wilcoxon signed-rank tests may also be conducted if appropriate. Audio and transcription data will be analysed using Nomarlization Process Theory as a framework for deductive thematic analysis (using the NVIVO CAQDAS software package). ETHICS AND DISSEMINATION: Ethical approval for the study has been granted through institutional ethical review (Bournemouth University); NHS Research Ethics committee approval was not required. Dissemination will occur through presentations to academic and practitioner audiences and publication results in peer-reviewed academic journals.

Differences in experiences of care between patients diagnosed with metastatic cancer of known and unknown primaries: mixed-method findings from the 2013 cancer patient experience survey in England.

OBJECTIVES: To explore differences in experiences of care reported in the Cancer Patient Experience Survey (CPES) between patients with cancer of unknown primary (CUP) and those with metastatic disease of known primary (non-CUP); to determine insights pertaining to the experiences of care for CUP respondents from free-text comments. DESIGN: Two separate, but related, studies, involving secondary analysis of existing data. Using frequency matching of CUP and non-CUP patients, statistical comparisons of responses to CPES questions were conducted. Free-text comments from CUP respondents were analysed thematically. SETTING AND PARTICIPANTS: The CPES questionnaire comprises 63 closed questions measuring 8 areas that relate to experience of care and 3 free-text questions. Questionnaires were mailed to all adult patients (aged ≥16 years) in England with cancer admitted to hospital between 1 September 2013 and 30 November 2013. RESULTS: Matched analysis of closed response items from 2992 patients found significant differences between CUP (n=1496) and non-CUP patients (n=1496): CUP patients were more likely to want more written information about their type of cancer and tests received, to receive their diagnosis from a general practitioner (GP) and have seen allied health professionals, but less likely to have understood explanations of their condition or had surgery. Freetext responses (n=3055) were coded into 17 categories and provided deeper insight regarding patient information and interactions with GPs. CPES data may include a preponderance of patients with favourable CUP subtypes and patients initially identified as CUP but whose primary was subsequently identified. CONCLUSIONS: These are the first large-scale studies to explore the experiences of care of CUP patients. The significant differences identified between the experiences of CUP and non-CUP patients suggest CUP patients require more psychosocial support and specific interventions to manage diagnostic uncertainty and the multiple investigations many CUP patients face. Substantial limitations were identified with the CPES data, emphasising the need for prospective studies.